This is my first posting although I have been reading the forums for a year now. I was diagnosed with secondaries to bones end of October 06, nine years after original bc. I started Arimidex and monthly bisphosphonates iv immediately. Three months ago I was told I wouldn’t be having any more bisphos without any explanation given. Saw my onc last week and asked him if I was going back on them - he said “I know in America they do keep you on them but in this country we only give a short course”. I know from reading some of your threads that many of you have been on them for 3, 4 or 5 years so I find it strange he said that.
The next evening there was a piece on TV on our local news that a woman being treated for secondary bc was not being prescribed a drug she needed due to funding. This woman was being seen by my onc. She is now travelling to the Royal Marsden where they have happily prescribed the drug for her. This leaves me feeling maybe I’m not getting bisphos because of funding.
Any info from those of you on bisphosphonates would be great.
Hi, I have Ibandronate bisphosphonates…daily tablets…I get these via my GP don’t know if you could take this route? I’ve been having bisphosphonates, at first infusions and now tablets since early 2004.
Best Wishes…xx
I have my zometa by infusion, some months a vein being found easily, some months absolutely horrendous (7 attempts a few months ago). I asked the sister doing the infusion about tablets and she said because I’ve been having treatment intraveneously for just over two years, my body would now not tolerate tablet form? Also it would very much depend on whether GP would be willing to prescribe the same in tablet form.
I think the latter is more likely to be the case. Has anybody else been told this?
Hi Denio…I changed to tablets after at least 2 and a half years of infusions. Like you I was having trouble with veins…the very last one took nine attempts. I’d been asked if I’d wanted to change to tablets before and I guess it also frees up more space at the hospital. Had no trouble with GP prescribing but not sure if it’s the same everywhere. I find the tablets okay…no side effects.
Belinda…xx
Like belinda I changed to tablets after about 2 years on pamidronate. This was on the oncs suggestion - I guess it cuts down the time for them that you have to be there for infusions. But I wasnt happy on them and felt some of my mets were getting a bit painful - so they let me go back on pamidronate.
Vermont - how extensive are your bone mets? I wonder if this has anything to do with them only giving for a short while. Have they scanned you again after the original dx to see if things have improved? I am one of those who has been on bisphos for some time now - I am into my 6th year. Although my mets have improved a lot they are still very extensive - were in all areas of my spine, skull, both sides of pelvis, top of femur, ribs and collarbone. Since being on bisphos my skull, ribs and collarbone dont show upon bone scans any more, although the damage is evident on CT & MRI. I am treated at the Royal Marsden.
The tablets are definitely cheaper because they dont have the trouble of the infusions etc!
I would definitely ask for tablets from the GP, can you bring them a downlaod from NICE showing that Bisophonates are approved for secondary breast cancer and from BCC,failing that you should take it up with your onc again
I have small but a number of sites of boney mets and its a great relief to me to be getting some treatment for them.
It is a real shame that you have to have this hassle on top of secondaries, hope you get on OK,
Thanks so much for your replies, I’m seeing my onc next week and feel confident now to question him further. (Will take hubby for support!)
Dawnhc - you might be right, my bone mets were sternum and ‘possibly a few spots on spine’. But if that’s the reason I would prefer that my onc said that. Trying to get any information out of him is like blood from a stone, such hard work I usually end up giving up. I had another bone scan last Monday and will get the results next week.
Hi Vermont
Sounds like a good idea to take your husband and ask the questions. I was told by someone to ask and then ask again. If you are concerned, which you are, then they should answer the question.
My consultant advised me to have bisphophonates. I seem to be the one phoning up asking when my next one is. There seems to be a discrepancy with the amount of time. I thought it was every 3/4 weeks but I have been told by my Mcmillan nurse its every 7/8 weeks. I am seeing my consultant in March so I am asking him when I should have it.
I do know that this treatment is expensive, the consultant told me this. He wants me to have this treatment. I think he should know more than others.
AneAnne
I started straight on the tablets (Ibandronic acid) as my veins are ridiculous and it causes me a lot of pain and stress whenever they try and take blood, insert cannulas etc.
The first few weeks I had a lot of aching everywhere, whilst my body got used to the drugs.
As people have said, the tablets are a cheaper then the IV method, as you are not paying for the nurses time etc…
I have bony mets to my sternum and a few spots on my spine. I have been taking ibandronic acid for a few years now. I was originally prescribed bisphosphonates by my gp before I had secondaries for osteopenia (spelling?) due to my knackered bones from being put through the menopause after my primary diagnosis. My gp is great and said that although expensive, ibandronic acid the best. My oncologist has told me to stay on these monthly tablets since I got my secondaries.
I was put on Pamidronate in 2004 for a short while, then my veins collapsed (due to the chemo I’d had 10 years previously) and they changed me to Bonefos. I then found out that I had to have chemo so they put a portacath in and because my line has to be flushed every 4 weeks they put me back on Pamidronate.
The usual course is every 4 weeks but I go 6 because I see my oncologist every 3 weeks and I’d spend most of my time up at the hospital!
I was dx in nov 07 (intial dx bc in 03) with mets to spine and lungs (previously sternum in 05 which i just had radio on and that is still stable) and my onc said that she would try me on intravenous z -something dont know the name - for 6 months to see if it had stabilised my bone mets, and then i would come off the treatment… Anyway she said she really wanted me to have ibandronate but couldn prescribe cos of funding - so i went to my gp who was able and has funded ibandronate… and then told my onc who says oh thats brilliant and she has several patients who have been on ibandronate for years and they are doin well… so my guess is that the drug which you have had intravenously maybe the same as what my onc originally was goin to prescribe and presume there is a limited period in which it is used??? Im no doctor but I guess this maybe the case? If it is and you are worried maybe ask if you can change or if it would benefit you to change to another drug?? or maybe the drug is the best one to suit your symptoms which is why your onc prescribed you it?? There are so many of us on different treatments there doesnt really seem to be a standard form of treatment so it maybe that 6 months is all youve needed!!!
Hope you get some answers…
Zippy xx
ps. ibandronate is great - have no side effects! only awkward thing is not eating for an hour after but its not that bad!!!
Sorry you’re having this problem. I can’t believe its cost as I thought pamidronate is cheap as it’s now made made by various companies. Zometa and ibandronate are quite expensive but was I under the impression that the woman on the telly was having trouble herceptin which is hugely more expensive than a biphos.
I’ve has zometa since oct 06 and I was under the impression that once diagnosed with bone mets you just carried on with them in one form or other. Bone scans don’t show micro lesions so to me it seems a risk to yake you off them especially if you have them in your spine as you don’t want the vertebrae to collapse - sorry to scare you.
You could try ring the nurse service here to get their view. They have access to all upto date info.
Good luck.
Kate
I’ve just found out today that I’m changing from Pamidronate (which I’ve been on for the past 3.5 years) to Zometa and Kate’s right, Zometa is quite a lot more expensive than Pamidronate.
My oncologist is determined that I’m going to be put on Zometa and she normally has her way when it comes to patients!
I actually started with one iv of Zometa but had terrible allergic reation to it (which is very rare). I was then changed to Pamidronate which was fine. From reading all your comments it would seem like you do stay on it long term so I’m still puzzled why I haven’t - hopefully Tuesday will find out. Bit worried that my onc seems to think you only stay on it long term in America - maybe I’ll suggest he logs on here!
Hope things go okay for you tomorrow and that you get answers to your questions. I know we all have varying degrees of the same things, i,e. bones, liver, lung etc so maybe the extent of your disease guides him to your treatment?
As you say, if nothing else works get him to log on here!!
Could I jump in and ask how you’re all getting on with Ibandronate? I’m about to start it as part of the ZICE trial (though my GP also said he’d be happy to prescribe it for me – I wouldn’t get it automatically from hospital). I’m a bit concerned it’s going to be too tough on my poor stomach. My bowels are in a bit of a state after the hip surgery, rads, chemo etc etc. My trial nurse is asking if I can have Zometa until my stomach settles down. Is it harsh on the tummy?
Vermont… I was told I’d stay on biphos as long as they worked.
Hi Humphr10, I’ve found Ibandronate trouble free…have been really careful to always stick to the guidelines on the leaflet…6 hour fast, tap water only, stay upright etc…etc…
Good Luck, I hope you find it ok…Belinda
Hi Humphr10 – I’ve been taking Bondronat (ibandronate tablets) for over four years for my bone mets, and have never had any side effects from it. As Belinda says, you just have to take it with water only, on an empty stomach, then wait an hour (sitting or standing up) before you eat or drink anything other than water, including any other meds. Easy when you get used to it!
I’m being switched from Pamidronate to Zometa next week and my oncologist said I shouldn’t notice any difference in treatments - except that Zometa is only 15 mins infusion whereas Pamidronate is 90 mins!
